That Time When I Underestimated My Daughter with Down Syndrome…Again

I am not a newbie to the world of disability. I have disabilities myself. I have tons of friends with disabilities. I have worked in the disability arena. In fact, I was working at UC Berkeley - the home of the disability rights movement - when I had the amniocentesis that told me that my

Moxie in 1st Grade (2 Schools, 2 IEP’s…)

This is an anecdotal piece about Moxie, a 7 year old with Down syndrome in 1st grade, and our journey this past academic year in school changes and IEP's. 7 year old Moxie started school in Blue Lake, California this academic year. It was a huge shift for her, going from the Mattole School on the

Tea Collection: $15 Dress Sale with Moxie as Their Ambassador

In Your Light: To My Daughter (with Down syndrome) on the Occasion of Her 7th Birthday

My daughter, when I woke up on the morning of your birthday, you were awake already. You had slipped out of your bed and headed straight for the art supplies. After I kissed your sweet cheeks good morning (and gave you a hug), you said that the drawing was for me - "see?! MOMMY" Ah!

The Case FOR Special Ed

I was like a snarling mama cat, clamouring for full inclusion until just recently. That is, for NOT having Moxie in a “special ed” classroom, in a classroom set aside in which all of the other children therein also have a cognitive disability. Moxie learns by imitation, I thought, what sense does it make to

Moxie & The Tooth Fairy!

Moxie’s Big Wheel Ride

Tell Me Why

Potty Training (with & without Down syndrome)

The Best School Ever said that it’s okay that Moxie isn’t potty trained, they want her (and more stuff like that that has me looking at my toes because I’m always worried I’ll start crying over their total awesomeness). But even with them saying so, I know it’s a good thing to get her on

Disciplining My Daughter with Down syndrome

Somehow, somewhere along the line, I stopped disciplining Moxie the same as I discipline Micah, or rather even, the same as I disciplined Micah when he was Moxie’s age. And I don’t know what happened exactly to change that. I suspect that her inexhaustible appetite for adventure and mischief had something to do with it – she

On This Day

at this moment four years ago, I was in labor, on the ball, on my hands and knees, walking, hanging on to the door frame at this moment four years ago, I was still hoping that the amniocentesis would be wrong. She had had diffuse fetal hydrops (- in which all of her skin was

The Road Less Traveled: The Connection Between Travel & Disability

This blog now seems to have an audience that is made up of travelers, people with disabilities and parents of kids with special needs/disabilities. This makes sense to me, because, after all, living life in a unique way is something that all three of these groups have in common, right? In This Post You Will

The Road Less Traveled: The Connection Between Travel & Disability & Living a Life with Moxie

This blog now seems to have an audience that is made up of travelers, people with disabilities and parents of kids with special needs/disabilities. This makes sense to me, because, after all, living life in a unique way is something that all three of these groups have in common, right? In This Post You Will

Stories of Growing Moxie: Choices & Challenges

One of the things I love about road travel is how conducive it is to reflection. I’ve been reflecting on moxie. I’m going to be honest here: I’ve wanted to put this post out forever. But I keep feeling like I’m too small fry of a blog, too much of a dork, I’m not cool

What If Moxie Were Slow?

I came upon Moxie the other day as she was sitting by herself. The ‘Big, Little’ book was open on her lap, her legs outstretched. She was signing the pictures, signing “tree” then signing ‘flower”, turning the page (with a flourish and slam) and signing on. I thought my heart was going to bust out

…About That Bit On “Learning to Go Slower” Because You Have a Child With Down syndrome…

Before I had Moxie – when I was searching online for something positive about Down syndrome, something that I could sink into with a sigh of relief, “oh, it’s going to be okay”, I came upon reasons why parents were grateful that they have a child with Down syndrome. Learning to slow down was often

Stereotypes, the Definition of a Syndrome & One21

I really appreciate the outpouring of support that came my way after some of the more vitriolic comments from my post regarding stereotypes and Down syndrome. I am grateful for those of you that have been friends with me – virtually or in person – real and true enough to hang in there and work

Moxie Hears

Moxie got her ears cleaned and checked this week. That is, the ENT (- which means the Ear, Nose and Throat) guy strapped her down to this thing called a “Papoose” so she looked like this: Only – dare I say? – more adorable. She was comfortable but confused. The ENT was fabulous, really deserves

A Spirit, Unsilenced #justiceforethan

I feel the spirit of Ethan so strongly. I don’t like talking about it because it seems ripe for a trip to FruitLoop Land, but you know what? I do. In This Post You Will Find:I feel his spirit.And I think of Ethan.Contributing to the Ethan Saylor Memorial Fund:Thank you! I feel his spirit. I

My Great Story & Ethan Saylor

I think my story in and of itself is a plump one. Take your pick, but most of the facets are individually pieces that people will write long about – from the early years on the rural sheep farm to the car accident. My parents becoming Baha’i’s, then moving to the Fiji Islands. Growing up

My Great Story & Ethan Saylor

I think my story in and of itself is a plump one. Take your pick, but most of the facets are individually pieces that people will write long about – from the early years on the rural sheep farm to the car accident. My parents becoming Baha’i’s, then moving to the Fiji Islands. Growing up

My Great Story & Ethan Saylor

I think my story in and of itself is a plump one. Take your pick, but most of the facets are individually pieces that people will write long about – from the early years on the rural sheep farm to the car accident. My parents becoming Baha’i’s, then moving to the Fiji Islands. Growing up

No Cost Options for Getting Your Child (with a Disability) an iPad

We all know apps can be great with kids… but what if your budget doesn’t allow for the purchase of an ipad itself? Here are some no cost options for getting your child (especially, your child with a disability) an ipad. *** In This Post You Will Find:Local Resources:Other Local Resources:Organizations:Good luck. Local Resources: Never

A Free iPad (for your child with a disability)

We all know apps can be great with kids… but what if your budget doesn’t allow for the purchase of an ipad itself? Here are some no cost options for getting your child (especially, your child with a disability) an ipad. *** In This Post You Will Find:Local Resources:Other Local Resources:Organizations:Good luck. Local Resources: Never

Some Thoughts on Monica and David

Monica and David: the story of a couple with Down syndrome who get married and begin their life together. It was originally aired a couple of years ago but Netflix just picked it up, which means I’m watching it for the first time. It really had me bawling like a small child through much of

Choosing Moxie: A Birth Story About Disability and Bravery

I. The beginning of my pregnancy with Moxie feels jumbled, as I recollect it now, some 3 years later. It’s a blur of happenings, events moving swiftly upon each other like quick waves that peak in a tsunami. The blur may be due to the events themselves or may be to the way my mind works – I have

Soul Juice

The original title of this post was “If You Don’t Get Depressed, Don’t Read This Post” because I was depressed when I first wrote it and felt like it should be from me – who suffers from depression – to you, who know what it’s about (because you know, you wouldn’t be reading it if

… the Post in Which I am a Defenseless Turtle at the IEP/Transition Meeting

So I’m sitting here with a sleeping Mac in my lap. I’m crying over him, big fat tears plopping all over his legs. I’m trying to figure out why exactly I’m so upset. The administrator’s parting comment over Micah reading Rumpelstiltskin (the book he brought along to read on his own during the meeting) rings

The Raw Feeling of Truth, A Guest Post and Slice of Life

In This Post You Will Find:I’m feeling pretty vulnerable today.I suppose sometimes truth is not comfortable.Slice of Life, I’m feeling pretty vulnerable today. I am guest posting on Amy Julia Becker’s blog, Thin Places. She is running a series by women regarding their choices in prenatal testing – my contribution is I Regretted My Amnio.